Christina E Holbein1, Kathy Zebracki2,3, Colleen F Bechtel1, Jaclyn Lennon Papadakis1, Elizabeth Franks Bruno4, Grayson N Holmbeck1. 1. Department of Psychology, Loyola University Chicago, Chicago, IL, USA. 2. Department of Psychology, Shriners Hospitals for Children, Chicago, IL, USA. 3. Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. 4. Wolff Child Psychology, Denver, CO, USA.
Abstract
AIM: To assess changes over time in parents' expectations of adult milestone achievement (college attendance, full-time job attainment, independent living, marriage, parenthood) for young people with spina bifida, to examine how expectancies relate to actual milestone achievement, and to compare milestone achievement in emerging adults with spina bifida with that of peers with typical development. METHOD: Sixty-eight families of children with spina bifida (mean age 8y 4mo, 37 males, 31 females) and 68 families of children with typical development (mean age 8y 6mo, 37 males, 31 females) participated at Time 1. At all subsequent timepoints, parents of young people with spina bifida were asked to rate their expectations of emerging adulthood milestone achievement. At Time 7, when participants were 22 to 23 years old, milestone achievement was assessed. RESULTS: Parents of young people with spina bifida lowered their expectations over time for most milestones; parents of children with higher cognitive ability reported decreases of lower magnitude. Parent expectancies were optimistic and unrelated to actual milestone achievement. Emerging adults with spina bifida were less likely than individuals with typical development to achieve all milestones. INTERPRETATION: Optimistic parental expectations may be adaptive for children with spina bifida and their families, although it is important for families to set realistic goals. Healthcare providers serve a key role in helping families of young people with spina bifida prepare for emerging adulthood.
AIM: To assess changes over time in parents' expectations of adult milestone achievement (college attendance, full-time job attainment, independent living, marriage, parenthood) for young people with spina bifida, to examine how expectancies relate to actual milestone achievement, and to compare milestone achievement in emerging adults with spina bifida with that of peers with typical development. METHOD: Sixty-eight families of children with spina bifida (mean age 8y 4mo, 37 males, 31 females) and 68 families of children with typical development (mean age 8y 6mo, 37 males, 31 females) participated at Time 1. At all subsequent timepoints, parents of young people with spina bifida were asked to rate their expectations of emerging adulthood milestone achievement. At Time 7, when participants were 22 to 23 years old, milestone achievement was assessed. RESULTS: Parents of young people with spina bifida lowered their expectations over time for most milestones; parents of children with higher cognitive ability reported decreases of lower magnitude. Parent expectancies were optimistic and unrelated to actual milestone achievement. Emerging adults with spina bifida were less likely than individuals with typical development to achieve all milestones. INTERPRETATION: Optimistic parental expectations may be adaptive for children with spina bifida and their families, although it is important for families to set realistic goals. Healthcare providers serve a key role in helping families of young people with spina bifida prepare for emerging adulthood.
Authors: Julie Lounds Taylor; Heather Doescher Hurd; Marsha Mailick Seltzer; Jan S Greenberg; Frank J Floyd Journal: Am J Intellect Dev Disabil Date: 2010-07
Authors: Jonathan A C Sterne; Ian R White; John B Carlin; Michael Spratt; Patrick Royston; Michael G Kenward; Angela M Wood; James R Carpenter Journal: BMJ Date: 2009-06-29
Authors: Sherry L Farr; Catharine Riley; Alissa R Van Zutphen; Timothy J Brei; Vinita Oberoi Leedom; Russell S Kirby; Laura J Pabst Journal: Birth Defects Res Date: 2021-12-18 Impact factor: 2.661